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tv   Cancer Scientists Call for Increased Research Funding  CSPAN  March 30, 2017 4:16am-6:42am EDT

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course and do not filibuster this nominee. if they do, i'm confident judge gorsuch will
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[inaudible conversations] >> the committee on oversight and government reform will come to order. without objection the chairs offer is to declare recess at any time. we have a very important hearing this morning. the federally funded cancer research coordination and innovation.
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this one, some hearings are more important than others. i wish it was the type of hearing that was at the top of the fold of every newspaper we have bought cancer is something that typically affects every family in some way, shape or form in an orchard my ipad a personal experience myself. my mom had breast cancer. she fought it for 10 plus years beginning in 1990 feis she passed away in 1995. my dad was a tough guy and everybody had to have a check up he felt fine and didn't need a check-up. unfortunately he got colon cancer. doctors elise told me if he had any sort of check up an eight or 10 years preceding his death he
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would probably be with us here today. he passed away two years ago and we miss them both. having to go through that is not something you wish upon anybody. in my own life there are a lot of things that allowed me to get closer to my parents and have an amazing experience with my parents. without getting too personal about that i think the importance here is a discussion that we are going to have. it's amazing to me, cancer will take the life of roughly 1500 people a day, 1500 people a day. so believe me i'm a strong advocate for united states military. i championed more money for the united states military. i want the men and women to have the most resources to protect and defend this nation but let's put in perspective 1500 people a
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day are going to die from cancer and so if you look at the trillions of dollars our government will spend, why is fighting cancer not a much much higher burden? it is for me. it is for a lot of people. i hated the president's budget. i have a lot of respect for nick lothian in the president himself but i thought his proposal in this category was pathetic. we should be spending millions of dollars to solve this. at the heart of what we want to hear is how much does the money make the difference? what would we do we did have more resources and with the resources where throwing out this is a handful, millions and again i don't want to treat it lightly but compared to the $4 trillion we will spend this
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year, we are going to spend a couple billion fighting what is going to kill 1500 people a day. that equation doesn't make sense so we want to hear not only what could happen if there was more money by what is happening with the funding that is going on and what are some of the exciting developments. everyone reads the news in the newspaper. i can certainly tell there has been huge progress since my mom was fighting this in the 1980s. my wife julie works for a plastic surgeon in utah to check out her degree in psychology and she is working with women who are fighting breast cancer. i'm very proud of her and the great important work that she does there but sure enough every day day in and day out young women are coming in and finding
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that they have this disease. it'd never think they would get it and now they are fighting it. there are exciting and amazing things that i think a lot of folks have reason to cheer and to be excited and having to go through if not the most difficult and horrific things in their lives. we have cancers of various types and i'm glad we have mrs. carr here. i know it's hard for families to talk about their own experience but it's good to hear from the family but it's also good to hear from some of the most exciting developments from some of the most prestigious institutions across this country. we can fill weeks on end of hearings talking about people's stories. we are going to have a host of hearings and watch all these new stations and talk about this and the thing that is probably going
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to affect real lives more than anything else is this hearing. i wish you would get the highlights in the headlines that it deserves and i wish there was a national imperative. i think it's one of those unique things that if we went house by house, home by home, voter by voter and asked them to rank where do you want to spend money , where should we prioritize money this would be at the top of the list. i'm a really conservative person but when you have 1500 people a day dying this is not hey we have got to push this down to a local budget. this should be a national imperative that drives us all to fund it properly and to truly truly make a difference and that's why want to call this
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hearing today. i know we all feel that way. i have gone over my time. i will yield back and recognize the ranking member. to me thank you very much mr. chairman for calling this very important hearing today. and it is very important. i thank all of our witnesses for being here and sharing your insights with us especially ms. carr and your family. we are so glad that you were here with your family to share the story of their son chad's amazing bravery in his battle with cancer. today the single biggest danger we face in fighting cancer and other deadly diseases in this country is president trump's budget.
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earlier this month president trump proposed a budget that would decimate the budget of the national institutes of health. it would/funding next year by nearly $6 billion or about a fifth of the nih's budget. this proposal gives little explanation for targeting nih for these massive cuts which can only be described. at the budget the white house secretary sean spicer tried to explain that these cuts were not really cuts at all. he was asked about the budget and he argued that only in
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washington does -- mean there was a cut. here is what he said and i quote , in washington if you get less money if they cut. and i think the reality is that in a lot of these efficiencies, duplicity spends money better and i think if you are wasting a lot of money that is not true dollars spent. i wish he could talk to a few of the people that i know who years ago went to nih with what was described as a fatal disease and
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in a matter of a few years because of research, because of some smart and imaginative people, people who dare to dream your dreams, who had bigger hopes, they were able to turn ms. carr a fatal disease of cancer into a crime and i know people like that. that is what mr. spicer may not get. and only when you are going through it your family is going through it. maybe that's what it takes for people to fully comprehend how significant taking that percentage of money from an nih
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budget from institutions all over the country doing significant research. so i know ms. carr in your written testimony for today you said president trump's budget cuts and i quote hits me right in the gut. well you are not alone. there's a bipartisan outrage and i think you are determined to say this. over this proposal in nih funding. republican congressman tom cole said this and i quote i don't favor cutting nih centers for disease control. you are much more likely to die in a pandemic than a terrorist attack so that is part of the
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defense of the country as well end of quote. mrs. carr in your testimony which i hope every member of congress reads, you point out that we need to devote more funding to this critical research and we need to make sure in cases like your sons which have little or no federal funding devoted to them today. mr. spicer did not make his quote. less funding is not a cut. president trump proposed increasing the pentagon budget by 54 billion dollars next year alone. our committee had a hearing last week, just last week on how the
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defense department is wasting tens of billions of dollars but for some reason cancer research is decimated rather than trimming the bloated defense budget. i believe there are few investments more significant than the investments we make in biomedical research. the work of nih is transformational. but the power to turn ideas into cures. the idea that there is a possibility, that there is a cure over here and we are reaching for in trying to get up but we cannot reach it but we know that if we could just get it it could save lives. so this research is also an incredible economic entity
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generating activity in every state in the country. nih grant support high-quality research and high-quality jobs and helping our science and technology workforce. it's not only in this country but throughout the world because other people will benefit from what we do. more importantly of all the research generates hope. generates hope. i hear it nearly every day when a constituent comes to my office and share their story. sometimes they speak for themselves and sometimes they speak for those who are no longer with us. the one thing that i and all of them together is our hope for tomorrow.
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i share their hope and i believe in the promise that biomedical research holds but we are at a crossroads. congress must reject the devastating cuts in nih propose a president trump. i have gone to some of the most pristine health country -- health centers in the country but in the world to the university of maryland and johns hopkins. i consider the magnitude of these proposed reductions, i think of all the potential lives lost that i think of all the breakthroughs that could go unfunded and the researchers who could take their talents overseas. i also think of the families like the carr's who have lost children to rare diseases, families like theirs who have turned their pain into their
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passion and into a purpose raising money and awareness in the hope of saving someone else the grief they experienced. so i've posited thank you for taking your pain and turning it into your passion and your purpose. but they cannot do it alone. they can't do it alone. they need a strong partner. now is the time to recommit ourselves to leadership with investments that reflect their priorities of innovation and health promotion. our budget should not abandon those values projected forward to hearing more about the innovative work of our families and i call on all of my colleagues to continue supporting these and other
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programs with strong federal investments. this is our watch. what we do today will not only impact the people this moment but will likely affect generations yet unborn and with that i yield back. >> i thank the gentleman. the chair notes the presence of our colleague representative debbie dingell from michigan's 12 district and her constituent is tammy carr testifying for the committee today. we appreciate your joining us today. we asked that representative thank be allowed to fully participate in today's hearing. without objection so ordered. i will hold the record open for five legislative days for new members would like to submit in a written statement but now it's time to introduce our panel of witnesses. we are very pleased to welcome ms. tammy carr the mother of chad who battled a rare pediatric brain cancer and we are thrilled that she is here
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and her family is here. i would actually like to yield to ms. dingell, congresswoman dingell to help introduce ms. carr. >> thank you mr. chairman thank you for your courtesy in allowing me to be here today. the carr family have been friends of the tangled family for a long time and thank you for allowing tammy and not just tammy but she is accompanied by jason and t.j. and thomas and it's a strength and courage of all of them that have inspired us in our community. they got a diagnosis that none of us want to hear that their son had cancer. she will tell you the detailed story more. after he was diagnosed the entire committee not only in ann arbor but in michigan but the entire country rallied around chad in the entire family. we were all inspired by chad's
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determination in this tough battle and that's how the phrase was coined chad test. in november of 20,00015 chad lost his battle. what i hope that all of us and in tammy jason's example as they are trying to find a bright light on a cloudy day and i know chad is watching from heaven as she tells her story today so thank you for allowing her to be here. >> i thank you. she is helping to also represent the chad tough foundation and we can't thank you enough for being here and sharing your story but also talking about the foundation and what you would like to see done so appreciate that and for you being here. we are also thrilled to have
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dr. marys beckerle the chief executive officer and director of the hunts pond cancer institute at the university meant utah medical school. in full disclosure having worked as a campaign manager and chief of staff it is actually how i came together with the fact that they have poured literally hundreds of millions of dollars into fight cancer and if somebody whose family members have passed away from cancer to have the cancer institute in our own backyard in the intermountain west we are very grateful and thankful that dr. dr. beckerle is contributing or talent to this very worthy cause and what the huntsman cancer institute is doing. her marker buoy institute. we also have dr. elizabeth jaffee deputy director of the
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kimmel conference the cancer center at johns hopkins university and i would appreciate it if we could have center coming to introduce her. >> thank you mr. chairman and truly honored to have her here today. she is at johns hopkins and johns hopkins as you well know is probably one of the greatest hospitals in the world and it so happens to be. >> dab in the middle of my district. they have done phenomenal work and it is an honor to have for cochairing the blue ribbon panel and serving the people of baltimore and not only baltimore but the world so i'm very pleased to have you and thank you for being with us. >> thank you and we also have dr. tyler jacks the director the institute for integrative cancer research at the massachusetts institute of technology, certainly one of the most
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premier prestigious universities that we have in this country and the immeasurable work and we are thrilled that dr. jacks is here as well. % to committee rule witnesses are to be sworn before they testify so if you'll please authorize and raise your right hands. do you solemnly swear or affirm that he will tell the truth the whole truth and nothing but the truth so help you god? thank you. they let the record reflect that all witnesses answered in the affirmative. we normally ask that you keep your verbal comments to five minutes but we will give you great latitude if you are on a roll to keep going. but your entire written record will -- written statement will be made part of the record an affair any attachments or something want to share afterwards there will be part of the record. mrs. carr we will start with you
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and by the way you have to straighten out microphone and pull it up close and make sure that the talk button is on. you are recognized. >> thank you chairman chaffetz and ranking member cummings. members of the committee. my name is tammy carr i'm here today to share about my son chad carr who battled a rare form of pediatric cancer. september 23, 2014 as senator dingell mentioned is the day that forever changed my life and what is truly important. that day we took our 3-year-old son chad or an mri after a fall. and mre i if we had to fight for an mri that we were told was simply to confirm a possible concussion. they told my husband jason and me that the mri would take a couple of hours and not to be worried. that was three and a half hours later and we were a little worried.
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when we saw the look in and as these used to -- anesthesiologists eyes we knew we were in trouble. she said they found something in a something with cancer. so what is apparent is your first reaction when you hear your child has cancer? i can tell you ours was not to panic, it was to fight. our questions were how do we fix this, what is the first step, how do we get the tumor out and what is the treatment plan? to this day the answer that we received completely blows my mind. as our drama and was pumping and labor ready for battle we were told i'm sorry your son has disease intrinsic -- it's a tumor in the brainstem that cannot need removed and there's really no treatment plan. there's a 0% survival rate and he has nine months to live. so i am sure mine is not the first story that you have heard
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about a child being diagnosed with cancer. it's sad. the polls at your heartstrings but please think about the realities that we were given to talk about hope, we were given no hope. zero. we were not given a fighting chance. our beautiful spunky 3-year-old who had been running around the house two days before was now given a death sentence. how is that possible? how is it possible that -- the prognosis for our son and the treatment protocol was virtually the same today. how is that possible when he lived in the most technologically advanced country in the world? how is it possible that our son was going to die and there was absolutely nothing that we could do about it? after pulling myself off the floor of the icu where he seemed to labor hours i decided we were
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not going to take that for an answer. that was not going to be chad story. there had to be a first child to survive and that child was going to be ours. we did all the research we could in the clinical trials and their few dedicated researchers that are studying this disease. what we found was they are almost entirely funded a families like ours. they have committed their life work to a disease that is unfunded and they continue to watch children die year after year. how can this be okay? these scientists are not receive any meaningful federal research dollars because as we have learned pediatric cancer overall is only 4% of all federal research dollars and the so-called rare disease the ipg
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does not make the cut for significant funding. cancer kills about 2000 children every year and 300 of those deaths are from it. that may not seem like a lot of people in the grand scheme of things but when you think of that many children dying year after year after so many years you start to understand the thousands and thousands of years of life these children never see. how many families need to be impacted before we can see some change? we also learned second only to accidents cancer is killing more children than anything else and what kind of cancer? brain cancer could literally is becoming an epidemic. so why not focus on the hardest brain tumor to treat? the tumor that slowly took chad's ability to walk, talk, swallow and ultimately live surely if you make inroads with that most difficult type of cancer wouldn't that open the
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floodgates to treat more critical tumor's? that made sense to us so while we were fighting for our child life we started the jacks foundation to honor the kid that we need to become part of that change. we are proud to work alongside other foundations in families who are similarly driven to make a difference in children who are suffering from t. ipg. we had many memories of the family during chad's battle. chad spent every possible moment with his brothers who are here today. who he loved with every ounce of his being. we shared her story with anyone who would listen and we will continue to do that. they put chad's position to think outside the box. we refuse to give up. unfortunately after fighting for 14 months our son chad took his
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final breath on september 23, 2015. that is the moment i read live over and over in my head something i think about everyday and will probably think about for the rest of my life. it's something that no parent should ever have to go through. it is not something i would wish on my worst enemy but we are each day trying to honor chad and all of the other dipg angels the chad tough foundation raise $1.5 million in 2015 for dipg research in honor of our son. today our family is more focused than ever on being part of the progress in this disease but it's just a drop in the bucket of what is really needed. families who have lived the reality that no parent grandparent or sibling would ever want to know should not be alone in this fight and believe me this can become a reality for anyone. we never thought this would happen to us and no one knows
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who it will be today and no one knows who will be tomorrow. when i hear about those potential cuts at nih it hits me right in the gut. there've been such great strides made around pediatric cancers such as leukemia. bright minds were given the resources necessary to focus on treatment. pediatric leukemia which was once considered a rare disease in 40 years ago at a 10% survival rate now has a survival rate of nearly 90%. chemotherapy was developed as a result of pediatric cancer pediatric leukemia research paid to think that the relatively small 4% research fund for pediatric cancer research might get smaller, the proposed 18% cut to the mh budget would be devastating for pediatric diseases but especially those
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over diseases such as dipg and at a time when there is momentum and discoveries made about the genetic makeup of these dipg tumors the last five years we have seen an explosive advancement in genomic data for cancer research to open up the battle for the most challenging and deadly pediatric cancer. without federal funding go we are quickly going to lose ground in that battle. federal funding is critical to recruiting the best and brightest scientists in the pediatric cancer research and no amount of family fund-raising like ours is going to replace that. these scientists are always choosing to take pay cuts to do research instead of seeking more
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of the risk private practice or industry jobs. foundations they help to establish the baseline to ensure that the research is pursued in the first place. if nih funding is reduced it will stifle progress for some of the most vulnerable people in our country have faced devastating diseases like dipg. i ask when you consider the proposed cuts to the nih budget to think about my son chad and all of the other children who are not given a fighting chance and who are not even given hope. you picture his face and you think about what might have been our family and others like ours will continue to work tirelessly in the fight but we cannot do it
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alone and we should not have to. without additional funding for research children facing diseases such as dipg will continue to have no hope for long-term survival. that is not a future that we can except for these children because it is no future at all. our children deserve more and we must do better. thank you again for the opportunity to speak today and i would be happy to answer any of the committees questions. >> thank you. doctors beckerle you are recognized for five minutes. >> thank you very much and thank you for that incredibly inspiring story and your tremendous commitment to cancer research. we are all with you 100%. ..
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>> >> one eyed of 21 p polling is a cancer survivor with over 15 million of us in the united states today in just the last 18 months the fda has approved 17 new cancer treatments in many, many more in the pipeline things to the national investment of cancer research.
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despite the is great progress as we have just heard we have so much more to do cancer is complex it is not a single disease but more than 200 different diseases. one added to amend or one out of three women will receive a cancer diagnosis in their lifetime and in the u.s. sale will one-person dies from cancer every minute of everyday. today i want to share some examples how one federally funded cancer center the hunts make cancer institute is making a difference for patients and their families. a major focus is on cancer genetics the steward of largest genetic negative eight --- database this
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links the family tree with clinical records our scientists have worked with agents and their families to discover the gene irresponsible for many types of inherited cancer including poland and pressed bavarian melanoma and others. so what does this mean for cancer patients today? i will share a story about greg johnson from utah and artist, has been dead father of two. member of his family how disease that recall fap ag mutation that causes colon cancer at a very young age if you have this to have 100 percent chance it and now enables us to realize which trap of high risk for
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colon cancer to get care. we in utah today he is outliving his family history his mother and grandmother both died of colon cancer in their '40's way too young now he is approaching 60 thanks to federally funded research of precision prevention the use of cancer genetics it is also very important for children working on this actively at uh huntsman cancer institute federal funding has led to dramatic improvements of survival 43% increase over the last couple of decades but just recently inherited former child agreeing cancer was recognize we could repurchase the drug for long cancer to cure this
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childhood disease but cancer still remains the leading cause of death in children so we have more to do. finally not everyone has the equivalent access one underserved group and in the state of utah 96% of the land masses and 70 percent is frontier with less than 107 persons per square mile sabir very sparse be populated many also have frontier residents who live far from health care centers relatively pour cancer outcomes beverly funded researchers sat huntsman cancer institute has a new approach to deliver counseling by telephone to reach those living in the world and frontier areas
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developing new tools for symptom management to support those cancer patients and their families who live far away from medical centers while undergoing active treatment. treatment is happening at cancer centers across the nation literally from sea to shining sea the federal government has unmatched in the irreplaceable role through sustained investment of cancer research we are deeply concerned with the proposal to cut nih funding by 18 percent will have a devastating impact on our progress the need for investment of cancer research is great and the time is right researches the hope for the future and clearly say slides and we need to have a sustained
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investment in this life-saving work. thank you very much. >> dr. recognize. >> figgie for your leadership and dedication to the innovations that turning cancers into chronic diseases leading patients with long and productive lives. leading the world than cancer renovation with continued investment to prevent cancer development then deputy director at johns hopkins in today adamite to focus of those k. eight --- the key areas the current challenges and to train the next generation minutes of a technological
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revolution using information how we transform treatment and prevention the 21st century cures' act is needed in addition to ongoing allocations to accelerate five years or rich take 10 years to move into treatment and a slow future discoveries 20 drugs that use the indian system has been approved without the decades investment patients with these cancers would have died of their disease in less than one your the rapid pace of scientific discovery has opened the door to new areas of research that would not have
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been possible five years ago as one example we're now investing in cancer screening studies to develop vaccines to recognize your earliest changes to eradicate these cells that have small changes before they cause cancer this is what we call prevention and have the potential to do much more there so many challenges to overcome those often neglected by the pharmaceutical industry. to conduct those clinical trials and one of them helped to lead the approval of a new therapy drug for a rare form of skin cancer. and other challenges the need to identify the barriers and solutions to
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have access to the best treatments studying these among their own populations those minorities that participate in, no - - clinical trials maryland was once a state that had the highest rate the this significant reduction of the screening programs in the advocacy groups are critical to an scheerer progress of mortality. into lookit that cancer development of new drug development.
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leading to a new area of medicine of precision medicine the utilizes a specific cancer to determine treatment and national clinical trial as patients with tailored options the only trial of its kind in the nation. highlight the incredible advances of innovation but we cannot end this progress unfortunately the perceived as stability without those significant increases has created a crisis people's lives depend on this research. eight:cancer patient
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treatment no treatment options were available johns hopkins had a clinical trial and those that lead up to the trial and then hurt tumor had shrunk 65% more than one year later the recent successes cannot continue and now is the time to ensure the future health of the technological industries and then to pry data opportunity of cancer treatments. of light to think the committee and delacorte to answering any questions you may have.
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>> to discuss it cancer research and the transformation and it is the privilege to be here today i m the compressor in the massachusetts institute of technology previously chairman on the advisor report with the american association for cancer research actively a participating including overseeing the research laboratory in with the national cancer institute
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and to have several exciting areas of cancer research and prevention and now afford to discussing this with you today. oh l'express my appreciation to the members of congress that was supported by the over bombing margins in the house and in the senate that includes funding. cancer research discoveries made over the last few decades have led to new class is tough medicine other discoveries have led to new methods when conventional treatments are more effective than the risk factors enable new forms of cancer prevention and aziz interception but still
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despite the progress based on current statistics over the next 10 years 15 million americans will be diagnosed with cancer including more than 150,000 children. this year's 600,000 americans will die of cancer we have come along way our job is far from completed today's hearing is timely with the uncertainty of the biomedical research regarding the president's preliminary budget proposal which recommends a nearly 18 percent cut such a budget decrease would have devastating effects on the nation's efforts to make progress against cancer and other diseases and imperil the training of the next generation of biomedical researchers. at the time of the passing
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of the national cancer act the understanding of cancer was extremely limited since that time federal investment has led to dramatic advances of all aspects of the disease process we did donald the identity in 1971 of a single gene implicated in cancer development but today more than 500 genes have been found to be altered anti-cancer therapies have been developed and many more to come while the development requires significant vestment from private industry they're almost always rooted in the basic science of discovery supported by the nih and nci. federal support for
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biomedical research is essential to improve the health of our citizens and is critical to the economic welfare of our country. for every 1 percent reduction of the death rate there is a $500 billion value to current generations of americans advances in biomedical research leads to investment from the private sector as well as venture capital investment and in massachusetts alone there are more than 60,000 jobs in the biopharmaceutical industry. federal investment has paved the way for the progress in the not too distant future the new and stimulating agents including those developed based on progress at m.i.t. is the mainstay of cancer treatment to improve
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response rates long response times and more cures. leading the world in achieving this progress we should have a sense of pride but still there is more for us to do. thanks for the opportunity to appear before you today and pleased to answer any questions you may have. >> recognize the gentleman from florida. >> this is been phenomenal panel doctor, he mentioned the benefits you do the research that gives value to society but it seems with the 21st century church sacked but as we get a break
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through it seems you will save billions of dollars because the cancer patients are older on government programs though it is great for saving lives but even as we dedicate money don't we save money in the long term? >> no doubt of the economic benefits and the cures for cancer will play out including reducing the cost of health care for those individuals and increasing productivity so that economic payoff is staggering. >> with that in mind what are the funding requirements perhaps what do we have to be doing here in congress? >> funding the 21st
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century care sector is an import misstep providing dedicated funding with those initiatives that we outlined so that work is already beginning with that consequence of the effects we have seen increases passing a $2 billion increase for nih that was a welcome relief after a long period of stagnant budget to open the doors to transformational new projects having an increase of $2 billion the advances of that magnitude are important for a sustained period of time to deliver on promised. >> we do a lot of oversight even with nih spending millions of dollars and that
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should be viewed in we can criticize that the canny reduce funding without negatively affecting cancer research? >> with the budget proposal board to be enacted estimates are zero grants would be funded next year so the simple answer to your question is no. the does not form -- fund those forms of research. >> perhaps i could comment that 80 percent of the budget is referred true research and training.
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the 5.$8 billion cut would be absolutely devastating with no new grants because every dollar of federal spending turns into new jobs and economic growth. and most import many to highlight the critical importance and impact of this type of cut on the pipeline of treaties it is the future of biomedical research in our country we would do is a full generation -- a whole generation. >> there is government money is that fair to say quite. >> we could not leverage the private money but the nih money allows innovation but the private money is geared
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towards a specific interest. >> i appreciate the testimony this is very important. thank you a big most of the members of this committee believe you were doing is very important. that is of lots in the government appoint figures that this is one area that this is the potential to do with huge amount of good and for the solvency going forward. i yield back. >> we will have unanimous consent to ask another round of questions.
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>> i am just happy to be here to support my friend but i want to ask some questions about the issues 1.$6 million can you talk about the type of research the foundation is supporting >> yes. for us in our infancy think about that uc dollars all the time. that is nothing. obviously we are supporting efforts that is called the dipg collaborative a small group of family foundations period the only ones funding this disease all of them come together in the dipg
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collaborative with a medical advisor report to help us find the most efficient way to get the biggest bang for our buck. sabir relieve efficient that i think the committee would appreciate and pool their resources together to make the biggest impact. we support at the university of michigan for reworking to look at the pediatric brain tumor center focuses solely on pediatric brain tumors. and i am also working with physicians to raise dollars a go directly to the university of michigan we have raised the 90 million to get the center started.
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>> q have been a tremendous advocate. can you talk about your experience with other families across the country that have been impacted? or hit by cancer that you have met? >> people say, this is not a club that anybody wants to join. they are put through lot while they tried to get their child healthy if that is possible. and there are strains of every aspect of their life. their job, their life, they are amazing people. i did not step into this world willingly banal i am hopeful i can be of help in any way possible.
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not everybody who goes through this battle wants to do what we're doing it i appreciate that. is an individual journey and people take the steps someone nothing to do with it after words. but there is a group of us that don't feel that way and it helps me to get through the day to know we're trying to create something good out of favorable situation. so that we could be advocates this is not for everybody nothing is wrong if they want to crawl and a whole but i need to see something good come out of it. anything that i can do to help. >> but when you say to
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congress today what is it that you hope for quick. >> you fight as hard as you can and and when i feed the dipg two 1/2 years ago when chad was diagnosed talk about precision medicine these tumors were not even common place we were not encouraged to get a biopsy because it is in the brain stem and it is dangerous know they have figured out how to do that in just two and a half years to see such progress. we donated his tumor post-mortem they did sequencing we did not have the biopsy and we had the post mortem and they found a
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new station that never knew existed. we have some medicines we know that can impact this. i was desperate if we had this information to and half years ago consenting have been done? we couldn't even sequenced this to enough years ago so if he had the ability to participate in the trial where they answered a corrupt catheter directly into the tumor in we feel obligated to do something that would not hurt him maybe it would cure him that the time and to learn so
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much from of triangle and the look at the budget and just of one disease. . . >> the number one priority when we talk about budget.
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again, maybe you're right. maybe take someone going through this for them to really get it. i don't wish anyone to go through this to really get it. listen to what were saying, you do not want this to happen to anyone you know. my thought would be, anything that anyone can do to fight these budget cuts, there needs to be increases not decreases. >> well said. thank you for sharing that. >> thank you mr. chairman and ranking member for including me today. >> will now recognize another gentleman from michigan, mr. paul mitchell. you are now recognize for five minutes. >> thank you. ms. carr, first, let me say cannot be were touched by your story. i have a six-year-old at home. please be assured i have already
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signed on to a letter urging the funding of nih. there's a lot of ways we can save money in our bloated government. i have been here 90 days and we have already seen a variety of ways to save money sites not addressing the health challenges we have in this country. cancer is one of so many. like many on this group we have lost family members to cancer. never a child. i cannot fathom that. i thank you for your bravery in taking this challenge on, because you're right calling in a whole is not the answer. let me ask you one question, is there any inkling to assess to why the nih would only allocate 4% of their money, their grants to pediatric cancer versus the others, any insight as to why that decision? seems to be a percentage any
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insight as to why? >> i agree with you, 4% is not enough, i think our kids deserve a lot more than 4%. i have five back from day one, don't think people realize that he's there. i don't think it's something people realize. they think about cancer and they think about kids, you see these advertisements with little ball children and you think that's where my daughter is going, they're not. i think that's a shame. as to why, unfortunately its numbers and money. pharmaceutical companies don't want to invest in something when they are not going to sell thousands and thousands of drunks. that's the reality. so that's one thing that i can say for sure is part of the issue. it's wrong. >> anyone else on the panel? >> perhaps i could comment as well. i think one of the things we are
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appreciating right now is incredible opportunity and childhood cancer research. that was one of the areas highlighted by the cancer when shot effort. in addition, i think much of the research money that is provided by the nih ghost what we could call fundamental cancer biology that is not targeted to a specific disease area but has relevance to many different disease areas. i want to reassure you that i lot of research at nci and nih is focused on things relevant to pediatric cancer. in fact my own laboratory is funded by basic science grant that we study how cells moves and the pathway my lab discovered his miss regulated in a rare childhood cancer and we
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are actively working on it as part of that research program. >> thank you. my time has expired and i apologize. i like to suggest maybe we can have a discussion on a hearing on oversight of how nih makes determination to grants and the percentage of the areas. >> i recognize mr. cummings. >> want to thank you very much for sharing the story with us. can you tell us a little bit about your son? you probably know better than anyone else. >> he was a special boy. he was beautiful and he was funny and he loved his family. he loved animals, he wanted to be an animal dr. would be grow up, that's what he would've told you. he carried two doggies around with him wherever he went.
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named barley of frederick. frederick is with him and barley is with me. he had an eclectic taste in food. he liked me so soup and peppers and he like to have fun. he loved life. >> you said something that that struck me when he said these were your exact words but he said we mourn for what could've been. >> every milestone. he would've gone to kindergarten last year. for this year. he watches friends and you see them reach a milestone and learn to write a by and he wanted to do that. he would say when my leg starts working again i'm going to ride a bike. so it's horrifying. it isn't right.
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>> one of the things i talk about my staff is that the limited amount of time we have on this earth. and whatever we do we need to do anything in our power to be effective and efficient. we can spend a lot of time going in circles and then you look back on your life and your frustrated. doctor, when you hear someone like this car coming, if she were to ask you, how do i make sure that i use my energy and the resources at hand to be most effective and efficient, what would you tell her? >> that's a really important question. would tell her that we need her partnership.
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in the past we did not as appreciate is much what patients and family members could help with and guide us. tell us what are the important questions reminding us that were not concentrating on the cancers were not concentrating on. that's what i would tell her, please be a partner in this. >> mrs. car, i like to get your reaction to a short video clip of our white house spokesperson sean spicer answering a question about the cut. >> i know what clip it is. i have seen it in this clip. >> in this clip you tries to claim that the massive reduction in funding is not really a cut at all. >> to cut the national institute of health budget they --%. as you know it's very important part of the government funding medical research.
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i was talking with mulvaney yesterday acknowledging the private-sector cuts we need a robust government program. >> rather be patient to congress to talk about medical innovation and how do you look at those things when you're cutting and age by 90% and many wanted to increase the budget. >> i think somebody asked him during the q&a. the same question. my. >> my outtake was that it would not be cut. >> there's an assumption washington that you get less money it's a cut. the reality is, and a lot of these there's efficiencies, duplicity, we suspend money better. if you're wasting money that is
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not a true dollars spent. to assume that just because you throw money at a problem and somehow magically solves, it's a very washington way of looking at a budget problem. we should be asking hard-working taxpayers to send more money to washington to fun things that don't for the those goals. >> do you agree that nih is currently wasting about $6 billion per year. >> no. i would buy to ask if he has ever had an experience like ours are known anybody who has, or president trump had asked the same question. when he says it's a waste, without more funding right now d ipg research if i specifically look at that is getting $0 funded. is it a waste to focus on this disease? without additional funding there is zero funding cundy. there'll be nothing. nothing focusing on one of the most difficult tumors and seeing things trickle down to the more treatable tumors would be a waste. >> so, you would agree that both democrats and republicans need
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to work together. >> i don't think this is a partisan issue. think of how many people's lives are being lost in this country. to me i just don't understand how cutting the funding mechanism to solve this issue makes sense. >> one less thing. i also listen to as he talked about the idea that you wish you did not have to go through this. none of us, unless we had been through it can really put ourselves in your place. but, as you are talking i kept going back to what i said to earlier, that is you take your
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pain and put it into a passion to do your purpose. you could have easily gone, not easily but you could've gone into a corner and said i'm not doing anything. i don't want to be bothered. i don't want to go through this. i don't want to relive it. but you have been able to turn it around. now, think of something that feeds your soul. to say that our god is a recycling got taking the pain quite often recycling it so you can become something stronger and better. so, i think you. i'm sorry you had to go through this. i also think your son. >> you asked earlier about what you might do differently. i just want to say, you are doing everything exactly amazingly right. we are so grateful for your voice, as you see the voice, your voice is the voice of chad, is the voice of all children and all families that have been
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affected by cancer. as the voice of everyone affected by cancer. i'm personally grateful to you for your bravery, your courage, your voice, and your commitment to continuing to work to make a difference at a time when it really matters. >> thank you. i think you are right. we have seen to this journey that things come together, they've come together in a way that somehow makes sense. i know that doesn't make sense but when you can see the puzzle pieces coming together to do something beyond a single person, we are blessed to have that. i feel that unfortunately this is my role in life and that was chads. his journey was to create change. this is to be his legacy. some going to continue to fight
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and do what i need to a partner with anyone who wants to admit that legacy. >> you are the agent of change. >> chat is. >> i'm doing my work for him. >> thank you. >> i now recognize the jonah from tennessee. >> thank you mr. chairman to thank you for calling the hearing. been here long time and i've served on four different committees. a been inherence on everything you can imagine. i don't think i've ever heard a kinder, sweeter tribute from one witness to another the dr. just it to you mrs. car. i think that is wonderful. i can't top it. i would not even try. i will say this, i'm so sorry because we all have so many meetings. i'm sorry i cannot get here for your testimony. i'm glad i've heard what i have so far. i have four grown children and nine grandchildren.
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i have and really i'm wrapped up in all of them, but i have a grandson who turned for in february. i'm wrapped up in that boy, saturday got to go to his first t-ball practice. i've always heard it said is the worst thing that can happen is to outlive one of your children, i don't have any question about that. i understand your son would've been or was for when he passed away so, i'm really so sorry. i can tell you this. several years ago i was the first one to cosponsor bill to give the nih a 100% increase in funding over five years. 20% per year which i would've done that for any other agency
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because i'm a conservative republican. i voted to cut about everything appeared. but because we got a 20 trillion debt and there was an article in the paper is that it is going to be 91 trillion by official government estimate 30 years. if we sit around a lot that happened were going to destroy the country basically. what will do is just printing so much money that everything they've tried it every country in the world and it hasn't worked yet. but i very much favor medical research and i appreciate the work that you are doing. i have to say this, everybody in the country wants us to give money for medical research, so we have to try to figure out as best we can on where we get the most bang for the bank or where were making the most progress. i would like to know, every year i've gone to the susan common
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race for the cure and the women, say one reason i go that's the biggest turnout of all beautiful women, thousands and thousands in knoxville, but men would not turn out for a run against prostate cancer. but where are we making the most progress, what would you say about that? >> i don't think there's a simple question. i think. >> i figured there wasn't a simple answer. >> certainly we would agree that the investments being made at the neh and nci have been foundational in the progress we have been talking about. we have entered a new era when it comes to how we think about cancer and how we treat the disease.
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i don't think you'll find much argument that that's effective use of the american tax dollars. the foundations you describe that mrs. car has started contribute. they are meaningful peace that a relatively small piece. the bulk of the support that takes place at universities and government laboratories laboratories comes from the nih. the progress we have made speaks for itself. >> i'll just said that the blue ribbon panel that we get to decide ten or iris of priority based on the progress we've made. in a way, that was a panel those able to prioritize. the priorities were to identify the challenges and try to overcome those. we've had great successes but now we need to address those that still remain including diseases such as pediatric
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cancers. were just learning that they are different from adult cancers. that was an important piece of information that came from nih funding and basic research. this is very important. >> i appreciate you say that because that is one thing i think the bulk of the research has been on the adult cancers the thought being it will trickle down. the kids are not adults. they're not getting cancer for the same reasons. so focusing more on those pediatric cancers. there is overlap, i understand that. but these kids, kids are not adults in a trickle up approach might make more sense. >> my dad and uncle died a prostrate cancer now i have a little touch of it. some dealing with that. very much interested in what you're doing and i will support you however i can. i know i've run out of time. maybe you can.
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>> what you're seeing in the progress today in terms of reduction in cancer deaths and increased survivorship is the result of decades of investment of the federal government cancer research and a fundamental biomedical research. a lot of the research that has led to the cures we have today and our knowledge about how to prevent cancer has come from basic discovery science. based on people following their curiosity and discovering new things about how cells works that only later did we appreciate for tackling the cancer problem. my lab started working on a protein and chicken getters gizzards. and now it's really just the fundamental science that has led to the discoveries and cures we
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have today. >> i now recognize the woman from illinois, ms. kelly. >> i've been on this committee for two terms and i have never felt like a film the to run around and give everybody hug and says can be okay. mrs. car, thank you for sharing your family story and thank you to jason, cj and tommy for not only fighting for chap ever fighting for all the children who can't fight for themselves. early in my career i worked on peds and the st. jude's patients. i can't relate exactly because your mom, but i went to funerals also. thank you so much. the role of clinical trials towards discovering life-saving medical innovations cannot be overstated. as chair of the congressional black caucus my partner focuses on medical research, provider
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and researcher pipelines and alleviating barriers and increasing recruitment of underrepresented communities. like you, i believe research is our best defense against diseases and conditions that strips to many loved ones and friends of their vitality. like you doctor jackie, i believe we have to ramp up efforts to identify culturally competent solutions to provide the medically underserved. my congratulations to you and your team for reducing the access cap to cancer. can you be more specific about which minority communities are represented in clinical trials within the 60% margin you mentioned? >> it's mostly african-americans in baltimore. this large african-american community. we also have hispanic community and have increased it and that community as well.
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but it's mostly geared toward the african-american community. what do you do for clinical trials that can congress to to be helpful. since mrs. car is here and we need to do more around kids and in the minority communities also. >> have to be honest, it was research that helped us figure things out. we were concerned that there are prior history among african-americans that research was bad due to incidences that happened 20 or 40 years ago. but that was not the issues for our community. was through research relearn several issues are important. one, the biology of not only the cancers are different and we are getting after biological studies, but also patients are more susceptible to high blood pressure and other diseases that make them ineligible for
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criteria in the clinical trials were not looser to allow for minimal damage to other organs. that was a big finding and without the research we would realize. >> other issue is that clinical trials to take more time. we had to figure out how to accommodate our patients both in transportation and not requiring more than what they could handle with having to be at work or family members needed to be at work. so combination of social and medical issues that we identified. >> to think you still deal with the tuskegee effect? >> believe it or not those not really be issue raised among our patients. in fact, the number of patients we're seeing in the african-american community was not reduced. it was the ones on clinical
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trials. as we have pointed out clinical trials are very important because most of the cancers are not curable. we wanted to make sure that african-american patients as well had access to the best clinical trials and were willing to consider them. >> thank you. i represent the second congressional district of illinois in chicago is home to two of the elite cancer centers. the cancer center of northwestern university and the university of chicago comprehensive cancer center. unfamiliar with the work of nih research funded institutions but i would like a general insight about research universities embedded in residential and commercial districts. can you speak to the economic activity that mah research institutions generate?
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and how research institutions have on surrounding communities. >> i director cancer center, we to more basic foundational research but also located nearby. a similar to the ones you mention in chicago. while we have observed is the investment from the federal government stimulates private investment. kendall square used to be a very industrial area. when i joined the faculty 25 years ago that industry was in decline. if you are to visit today you would be amazed at the number of pharmaceutical industry technology companies and medical device companies that have surrounded the mit campus. they need to be close where the action is. the action is funded by government grants. the massachusetts last year
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there were $2 billion of venture capital investment in new companies. that is one indication of the economic payback that investment makes. >> saving lives in the moral part of it economically makes sense too. >> thank you and i deal back. >> i recognize the gentleman from alabama for five minutes. >> i want to ask a few questions and this is something that really touches me. i have really been working on regulatory issues that have impacted everything in the country.
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this is for researchers. are there any unnecessary burdensome regulations from other agencies that we could modify, change, correct? so it doesn't slower restrict cancer research? >> i'll give it a shot. i work closely with fta. i hold investigator initiated, i have to say the fta is very helpful and helps us developed more rapidly drugs because of their large experience in drug development. there has been reorganization recently to your point that has helped by bringing cancer under one leadership. it has been helpful. the progress we have made in cancer drug development, immunotherapy drugs being
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specific area has helped to push the fta to see that we need a more rapid way of getting drugs developed. from my point of view i see yo fda's been helpful and they have been modifying how they do business based on the changing environment. >> one of my close friends has a brain tumor and his going to india for treatment, treatment that is going to prefer testing at john hopkins for alzheimer's. but now for treatment of the tumor seems to be working. some of the impediments the fta puts there for people who want to make that choice. rather than having to go to india to get that treatment here and give him a fighting chance, that's one of my issues.
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do you know how much of the nah? >> the community we are involved in with these families that have suffered with children unfortunately they are forced to go out as well they are ahead of the game in australia and the u.k., germany and mexico in some, they have no choice. >> people think of your going to india you're going off for an exotic treatment and he's going to bang with door which is like our silicon valley. this is high-tech, sophisticated and from a perspective of a lot of patients we need to allow that to happen here. patients need to have that choice. >> i totally agree. when there so much at risk and on the line parents are at least willing to do whatever it takes. when you telling some of their 0% chance in some insane role we
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have this option and to be able to do that is important. >> i appreciate you getting and getting that response. i grew up in alabama. in what people would consider dirt poor. particularly interested in what the huntsman cancer research is doing in rural areas, is that nationwide? >> so because we are surrounded by vast room populations we are in a great place in the country to make this a focus. we believe that the work were doing in utah and the mountain west has complete relevance to areas other places. for example the symptom management tool we developed we know patients undergoing
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chemotherapy who are rural patients drive long hours away from medical center after the treatment. they go home and are facing debilitating and sometimes challenging side effects. we have developed a tool that touches base with the under their caregiver. we found that has alleviated their symptoms and also reduced caregiver anxiety. that thing is way in which we reach out and support are rural patients and families during the course of treatment. what we are learning should be relevance around the country. >> if the chairman would indulge me warmer question that is, drug prices i saw study here from the cancer center about $3 billion wasted in cancer treatment where
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the drug companies are putting more medicine in the bile that is needed. the medicine is being thrown away. valued at about $3 billion. would you like to comment on that? are you aware of that? >> i have the article here. if i can enter into the record. >> without objection. >> i now recognize the gentleman from florida. >> thank you so much mr. chairman and two ranking member and mrs. carr, thank you so much for talking about chad. i did not know chad, but i raised three sons. and i know chad. and to hear your description of him, he represents thousands of
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children throughout this country, millions throughout the world. in your written testimony you talked about the dip g claims about 300 lives per year. you mention that it's not really a larger huge number. but which child would we not do everything in our power to save? if it was one child, two or 300, which one would we not to everything within our power to save? i also understand that chad tough foundation is a larger group of organizations looking for clues to dip g. together the groups are funding a registry to collect information on these diseases, is that correct? >> yes. dip g collaborative i spoke about had formed the dip g registry.
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so, when chad passed away we donated his tumor postmortem. it was the university of michigan has some of that, as well as a physician who is now going to a learning children's hospital. it is also kept in the registry so it can be utilized by scientists around the country. that is one investment this collaborative has made to get the word out that this is a way we can impact research. >> last month they announced that it was it launching a study of african-american cancers in the united states. drawing on existing population -based cancer registry, the detroit research on cancer survivor study. they look at factors that affect survival rates among african-americans diagnosed with cancer. we talked a little bit about that but doctor could you explain the range of social and
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biographical bear years that it might study in related to cancer survival? >> that is a big question and not my area of expertise per se. i would expect there to be a range of issues including what the underlying types of diseases the patients have had and what access they have had for those treatments. when a patient was healthy gets cancer it's easier to receive treatments we have been treatments have unde underlying comorbidities. that could be a major issue depending on that excess of care the patient has had. associate so see an economic is important because even getting transportation is a very challenging issue for patients who do not have the means.
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>> i would just comment that i think this is one of the things that is important about the national cancer institute's efforts. the nci can bring together these nationwide consortia and registries so we can get information about survivorship and outcomes for patients across the country. that eliminates the sampling error that can happen if you're looking at one site and one state that might be different than what happens at another place of the country. this is an important contribution toward national health. >> using data from the nci study they reduce the reduction of second malignancies among childhood cancers.
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researchers were able to determine that over the course of 15 years or more, children treated with lower doses of radiation were less likely to develop second cancers. can you comment on the value of this long-term research? >> i'm happy to comment on that. what that study points out his progress that we have made in understanding the consequences of the treatments we use. radiation is a good example. it's clear that radiation can promote the kind of changes in cells that ultimately lead to cancer. therefore those treatments have to be set at appropriate doses and minimize that progress is being made a play about and fewer second malignancies and those children. >> related to that, i think this area of childhood cancer survivorship is really important. we have a great success in our ability to treat childhood cancers even though have more to do. what we are beginning to see is there are late effects of these treatments.
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sometimes radiation or chemotherapy, sometimes psychosocial effects, fertility effects, et cetera. there many things where research is required and would be helpful to address the current unmet needs of individuals have undergone a successful treatment for childhood cancer so we can make it better in the future. >> thank you. i yield the back. >> i now recognize the gentleman from iowa. >> thank you mr. chairman. think it's our panelists for being here. thank you for your emotional testimony. i was standing in the doorway when he started to testify. i am the father six children and i started thinking of everyone of them. i cannot imagine what that was like. i'm so proud that you are here today.
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you have serve the cause well. i'm sure chad is very proud of his mom today as well. >> thank you so much. >> i have two questions. first of all, we look at the dollars spent by governments and by people who donate and contribute to research, cancer research, alzheimer's, whatever it may be. i'm always concerned as a crew businessman, what kind of collaboration is there between the disparate research facilities and institutions. are we doing enough to share the information? collective collectively there is and not enough research going on. i'm a huge advocate of what's
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being done. maybe people being done in research facilities, can you give me your thoughts, is there enough collaboration, if there's not can the federal government played a role in that? a repository of information? >> you have raised important point. we are facing that problem increasingly by the day. the amount of data we are generating today's greater because of new technology. the answer is yes, there is considerable collaboration and interaction. the national cancer institute would be one example. a network of cancer centers of the country who interact and share information. there's still a gap. the cancer shot recommended the development of a national infrastructure to facilitate the sharing of cancer data, to start more appropriately, to make access easier to develop software tools necessary to analyze it. so as to break down existing barriers that you currently exist to improve the situation.
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there's examples of progress but still in need. the matchup funding that you have funded will help us close that gap. >> i could give you some examples of what is ongoing. we now have through the efforts the development of the open access resource for sharing cancer and even brought in outside groups such as foundation medicine that is going to double the number patient information into this. this is an open access available to everyone. as doctor jack said, one of the blue ribbon panel initiatives is to increase and use the funding given to congress to now increase this ability, also the nci this developing cloud pilots. these pilots will expand data
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sets that will include imaging and immunotherapeutic. so integrating the data set so we can start to look at different cancers and better understand the tumor environment and not just the genetics. there's other factors that contribute. it what it will allow us to do is look at rare cancers and try to use cancers put in this database to increase the number and we can make more hypotheses as to why patients get the cancers and identify targets to develop drugs. >> all of us in the cancer research community are desperately working to improve outcomes for cancer patients. we know none of us as individuals or even with her institution hold all of the knowledge necessary. we are naturally inclined to
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collaborate and share information. the national cancer institute is helping us in that effort. the example i would get related to our new knowledge and the precision medicine arrow is that we now are trying to test exciting new therapies that are only relevant for small subset of patients that have a particular dna signature. what that means is for disease like lung cancer that it's a relatively common disease, patients with a particular type of lung cancer that might be eligible to contribute and participate in a clinical trial might represent less than 10%, even 1% of the total patients. the only way will understand if the treatment will work is if we have a national network in which we find these patients across the country and bring them together to participate in a clinical trial.
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that is the kind of infrastructure and support that is provided through federal funding by the national cancer institute. >> my time has expired. i like to say there's a lot of government to help you won't do that we are. one of the things we should be involved in his research and the hideous diseases. that's for the 21st century cures acting out against the presidents budget in this area. >> i think the gentleman. i now recognize ms. watson coleman from new jersey. >> i guess we'll go to miss lauren from michigan. >> thank you. i want you to know if your -- being from michigan we wash the
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love, support and advocacy. just know that chad's inspirational fight against cancer and your devotion to raising funds and awareness to da pg is remarkable. >> thank you. michigan state another fence and often agree on everything. however chad's battle with cancer and commitment to his continuing legacy has crossed across the lines and united spartans and wolverines behind a common cause. cancer research is something that impacts all of us, not just democrats or republicans. when the president released his proposed budget i was devastated to see the cuts been made to nih. in your testimony, you discussed
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some major strides that nih researchers have made to cancers such as leukemia. as you noted, 40 years ago leukemia had a 10% survival rate. today, the survival rate is almost 90%. that represents just one of the countless medical achievements that has been made as a result of funding to nih. mrs. car, as someone with firsthand knowledge i would like you to speak to us as members of congress to have the ability of increasing funding as to the merit of the research being done to the funding. >> thank you. we like to call it in the community what we hope for is the home run strategy. pediatric leukemia was considered a rare disease not too long ago.
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they focused. whether or not you have considered da pg it is rare, but brain tumors in general are not rare. pediatric brain tumors are the leading cause of cancer deaths in children. so focusing on pediatric brain tumors is something that makes sense. for us, the strategy that were taking as far as our funding which again is a drop in the bucket, if we focus on the hardest tumor and really focus on it now with momentum, there's tissue now, they can study samples. this are learning about the ability to pass the blood brain barrier with a catheter which is clinical trial that chad was a part of. if we really focus i feel like even raising the bar from 0% to
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2% is a big movement. a lot of researchers, because we are willing to provide some funding and there is a big room to increase success rates. young scientists are now interested in looking into this disease. that's a really wonderful thing. we talked about clinical trials being important, a lot of children with the pg, chad was a lucky one who is able to participate in a clinical trial. a lot of these children don't meet the requirements. they're not even able to participate. as a parent i can tell you that when you're deciding on the treatment plan for your child because that's what this is, the doctors don't know what to tell you. radiation is the only thing they know to tell you which we know now cause the secretary problems. so, in the end if they were to
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survive, they're not out of the woods. there's going to be other secondary cancers. chad received 30 rounds of radiation. so, i think focusing on the toughest, allowing that to open the floodgates for the other, more treatable tumors and focusing on pediatric tumors because again, children are not adults. >> i want to thank you again i commend your commitment to fighting. again to say, help my colleagues are able to take your story is a reason for why we cannot allow these proposed cuts to nih to be implemented in the upcoming budget. on a personal note, everyone is strives to have the life you legacy or leave a mark or do something that will be reflected in history as a game changer. your son did that.
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with your fight come his life will mean so much more to so many people. thank you so much. >> thank you, we believe that his five years he's accomplished more than most people accomplish in their lives. >> thank you so much. >> will now recognize the gentleman from wisconsin. >> just a general question, what are the funding requirements for 21st century cures and nih's research on cancer? >> are you talking about the nature of the applications, that sort of thing? >> know, how much do you anticipate. >> well, we outlined several recommendations,'s each of which has a broad scope. frankly, the monies that came to the 21st century cures akhtar start to begin to accomplish those goals. i don't think we can accomplish all of them with the monies
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allocated but it would be a start. >> the current allocation for this year's 300 million. i think it could've been two or three times that amount and we could've spent the money wisely. >> is there anyway you can prioritize research better or that you could say that down at all? >> within a specific program we work very hard to create a series of prioritize recommendations. what you have there is our best effort in a particular form of cancer, more mission focused form of cancer research. that is our set of priorities for that particular program. i should add, that funding does not in anyway replace the standard appropriation to the nih or nci. that's more substantial and provides funding across a range of research. >> understand a lot of what 21st century cures.
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up about the cheapest guy appear. i do know how important not just researches for cancer but other things and all the people affected. we just touched upon brain tumors in children. to know how many different institutions around the country are doing work in this area? >> mrs. car may no better. >> i'm not really sure how many are focusing. i know michigan were trying to create a brain tumor center where that is what they focus on. i'll believe anything exist like that currently. there people doing research over, as far as the fdg, there's some phenomenal researchers at stanford. >> what i'm trying to get to, cancer in general, i know we do a lot of research and wisconsin on cancer in wisconsin.
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how many different universities run the country are doing cancer research? can you answer that? >> the research universities in america, all of them have programs that relate to cancer. that kind of broad-based effort is necessary for variety of reasons. there's a lot to be learned and we want to draw on the resources across the country. and you want to train the individuals in your states to become biomedical researchers and scientists. that has to be done on a national level as well. >> you two competing interest in my mind. on the one hand it's good that you have institutions run the country doing cancer research because maybe there is something that people at mit will work that others never thought would
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work give a top-down approach you say don't go there but you can go there by good things. on the other hand you have a concern that there many places around the country, you might be duplicating efforts, you might not be coordinated with each other. that's on getting to, and you tell me, 40, 60 different places doing cancer research. maybe there 80, i don't know. where do you think we are in the conflict or competing goals. make sure everybody's independent and can do somethi something, on the other hand you don't want to have four people doing the same thing for someone to research they found out in other places or other countries not effective, five years ago. >> that the complex question. it's just very complex to give a straight answer. a few facts we know. if you look around the country at the different cancer centers with different expertise, how
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how many places do bring cancer, not that many. it's also geared toward what funding is available. currently the funding is pretty tight at the nih and nci. lisa get 25 or 30% of grants funded. now were between ten and 14%. that limits what can be done. we believe, based on review groups that there is much greater amounts of good research that is being funded. i suspect the review process is one way to prevent duplication. >> it scares me when you say you're not sure how many place around the country are doing research on brain tumors, i would that people would say were doing it at these places and
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these -- but you don't know. >> because there are not many places that do it. if you asked me about immunotherapy could tell you there are five places that do immunotherapy around the question. but i can tell you about brain tumors. other when inking st. jude's probably does brain tumors but there's no brain tuner institute. when he talk about the apg and again it's a small, rare tumor. the folks that come together to fund to that effort, that's what we do is a collaborative. we make sure every proposal that comes through because there so few of us, the duplication of efforts is not something we want to say. >> it concerns me that you don't know. i would think it was show up in maybe one of you are someone who wasn't invited here would say we are doing cancer research and these 80 institutions and just have it here. >> is important to know whom you are speaking with. we represent particular institutions.
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if your test the director of the national cancer institute he may have an answer for you. sometimes it's difficult to know for example at mit last year, we announced a new initiative on pediatric brain cancer. my colleagues probably don't know that because it was a local effort. >> but they should know it. >> the gentlemen's time has expired. will now recognize the gentleman from california. >> thank you. i want to thank you and the ranking member and the panelist. this is a personal issue for so many of us. i will explain that a little. i want to address it, from a colleague on the other side of the aisle about cost benefits. as a democrat from the san francisco bay area think cost benefits are important.
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last week we talked about not a by the business community that was hundred $25 for the waste in their budget. yet, the administration is suggesting taking money out of and ih to put money in their budget. by the way that hearing was bipartisan as this one is in terms of applying our oversight area to jump to the conclusion that we should give them money at the expense of and ih is appalling. just the cost benefit returns almost $8.50 an extra spending. just on the genome project is a result of a chilling dollars in economic growth. all of these things i learned because when i was elected to congress three years ago i was unfortunately joined the club. what i have is chronic leukemia. during the process there were ups and downs as to my mortality. as has been testified earlier,
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20 years ago there is a 10% survival rating, now there's a 90% survival rating. having been involved in this and absorb myself in the history of having now talked to doctors and read their books and go to nih and spent times at the university of california in san francisco which we say is the second largest recipients of nih funding . .
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>> >> that was an initiative by people who cared to come before congress to convince congress said president nixon to sign legislation that would store all of this of the synergy to understand what i am caution by people and my own district don't get carried away there is known cure wonderful researchers mitt is hard to believe the value that we get these young nameless people who saved my lives and millions of others. sonat context to see the value added around the world
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with those relationships around the world and the moral high ground by doing that in speaking to the chief researcher out there because china is trying desperately to replicate what we have but it is staggering that we would consider other overvalues to how we invest one of the most amazing statistics is research related gains a period 71 negative 9,782,000 have an economic value of $95 trillion. maybe not in this instance by anime living example my oncologist told me 15 years ago of somebody was diagnosed he with sprinkle water on me and told me to enjoy life but now hopefully i will have an 85% survival rate but that pediatric
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research was because when you read the stories of young people dying of leukemia and what i have because the moral obligation of americans to invest in that. so briefly in conclusion starting a survivors caucus that is broadly defined i hope they will come to speak is communication with amazing return on investment and those who have been impacted. so how can we do better? >> i think hearing with
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families have to say to really listen to make that change and help do something and you're in a position to make that happen we can talk all we want but he was the ones that can make things happen you hold all the power. >> but we cannot do that without your voice thank you >> mr. chairman as the eight congressional district very much in the arts of the district, and to be the representative in this area i know intimately aikido close track of all the research going on into
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leukemia and lung cancer in:cancer area insisted fibrosis, asthma, bulimia
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looking at this $6 billion cut and are certain to buy it. those who have not been directly touched to go about their business is basically how do we maintained of consciousness of the coexistence? i remember when my chemotherapy ended then i returned also how do we make a conscious this permeate quick. >> it is hard. i did not know lot of these things before i had to know that.
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i did know that pediatrics odbc 4% funding what this form of cancer even was so that our trying to resonate people feel sad and sorry but hopefully they think about the impact there are benefits to research beyond a just saving people right now. there are financial implications and there are so much there. keitel then you don't get it until you get it. but we don't want people to join that club soda to share our story there are only so many of us. id think goodness only so many want to share their stories so to create those advocates who can do that
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one. >> one of the great american athletes announce of prevention is worth a pound of cure and talk about alzheimer's disease then we spend too much to 50 times more treating people with alzheimer's with medicaid and medicare than we do on research for a care which is now beginning to spiral out of control with the jump of the people that are suffering is extraordinary set of talked-about how people are focused on prevention rather than spending a lot of money three. >> this is an important point in the time is right
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to focus on the syria clearly we need to continue our investment death of the development of new treatments the people who are already affected by we now know that 50 percent of all cancers could be prevented by a cessation of smoking or understanding of the inherited risk that can improve the disease. so we now have enough scientific knowledge to put some dedicated focus on prevention. one focus was precision prevention to capitalize on the deep knowledge of cancer that runs in families there are 50 different types of inherited cancer and we
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could identify everybody to screen them we could prevent them from developing the untreatable disease in the case of this tizzies there are 1 million people in the the state's the has a predisposition to colorectal india during cancer battle the 5% of the people who have that syndrome know that they have it. so that means they do the right thing to get the colostomy but because they have the syndrome they develop way before they start the screening so if we know who was at risk we can prevent them from developing in the first place if you save lives she will save money. >> thanks for calling this
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hearing cancer is very personal thing with me 93 another was diagnosed with lung cancer doctors said it did not respond to chemotherapy and nothing was possible so we unfortunate pocket -- a partner to get her into protocol led johns hopkins but during that time we were actively in gauged in cutting edge with immunotherapy and antibodies for lost my father to renal cell carcinoma and others to thyroid cancer in cousins to leukemia so there is no group of diseases that
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affect me more than cancer and talking about how to get out the word, i don't think there is a family in this country that has not been touched by cancer rather pediatric and god bless you for using your tragedy to save why is your a courageous woman but with all the different cancers i think the budget until think anyone will support taking money away from the national institutes of health. but it is more than cancer. it is diabetic i would like to not be on my medication in some meetings that could
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affect me even as an adult or as an african-american even more than african but i have a bunch of stuff that i could be very specific scientific understanding evaluation and i represent a good number of people in this country so i will fight as hard as psyche and to make sure we don't lose money in real realistic in terms of our needs there is no greater disease to conquer than cancer thank you for giving me the opportunity to. >> we are at the conclusion here first of all, 82
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doctors you do some very rewarding work and the representation of those institutions who work hard every day behind the scenes with the spotlight that they deserve a hope in some way the committee will do some of that. and hope you know, we appreciate end sometimes it takes decades to find the breakthrough tonight came from something we did not know that it would come from tackling the most difficult things in the nation and redo have a duty and obligation to fund it and we are now position to make a difference i think the
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budget proposal is even better than they do hope poolsides the the aisle to have the of very different outcome that was proposed nevertheless there are things many to continue to learn will take another few months to put together another hearing but the scientist to talk about the most promising efforts but very specific cases i have heard amazing stories from 60 minutes that there is a
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big breakthrough right on the verge we like to hear those stories that would help the members get a better grip one you have helped to eliminate that but to highlight the specific method to allow them to answer those questions for those who want to find that type of research because it is so promising. >> thanks for being here and we wish you nothing but the best this was pretty boring boring, right? t.j. and tommy? [laughter] but very important and later in life you will recognize to say by mom did that? that is not something nobody
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ever dreamed of in nobody wants to testify before congress, believe me. but to your mom and dad thinks dior's drink we do appreciate it. and we wish you never have to go through an antenna and simplify i don't know how to quantify all the families who have gone through something in do go to places you do not want to go and then you step up to the line . thank you for doing and appreciate that.
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you have a beautiful family. thank you for sharing data. god bless you. we are adjourned. [inaudible conversations]ervicee
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